The painful disease endometriosis is taking on average a decade to diagnose

Tassie women are facing even more hurdles when trying to get a diagnosis for endometriosis. How women in health are tackling this issue.

Endometriosis generic image. Picture: iStock

It takes three years longer in Tasmania to get a diagnosis for this debilitating disease.

March is Endometriosis Awareness Month, this disorder impacts around 1 in 9 women but experts believe this rate is higher due to a delay in diagnosis.

A barrier facing people in getting a diagnosis can include access to general practitioners, which is a prominent issue in Tasmania, as well as a lack of endometriosis informed GPs.

Maree Davenport has released a book called The Australian Guide to Living Well with Endometriosis which gives advice on how to approach getting a diagnosis.

Endometriosis, or endo, is a condition where tissue grows outside the uterus on organs like ovaries, fallopian tubes, even bowels and bladder.

Maree Davenport, The Australian Guide to Living Well with Endometriosis. Picture: supplied

Women’s Health Tasmania deputy chief executive officer Lucinda Shannon said endo can be a “real pain” and more than “a bad period”.

“While the most common symptom is severe pelvic pain, especially during periods, endo can also cause chronic pain, pain during sex, fatigue, and even issues like bloating, diarrhoea, or constipation,” she said.

Book author Ms Davenport said her experience comes from supporting her daughter in getting a diagnosis.

Her daughter Brianna, now 32, started to experience symptoms at just 8-years-old.

Brianna had symptoms and issues across the decades including with her bowel and appendix, things many women might not recognise as endo issues.

“It’s about raising awareness, particularly for the younger girls and women,” Ms Davenport said.

“So the mums, teachers, coaches know when to say ‘hang on, that’s not normal.”

The book gives information on what people can expect when needing a diagnosis.

Another issue was women and girls face gender bias when seeking medical help, Ms Davenport found.

“The federal government’s Women’s Health Advisory Council found in the gender bias survey that 70 per cent of women experience bias in diagnosis and treatment of all health conditions,” she said.

Rachel Andrew, Vagenius Tasmania co-founder and physiotherapist. Picture: supplied

Ms Shannon said there was an overlap in a lot of conditions and endo symptoms.

“Endo doesn’t always show up on ultrasounds, so doctors often can’t confirm it without surgery,” she said.

“Many people may also have found that health professionals, friends and family dismiss their pain as ‘just bad periods’.”

Ms Davenport used lived experience to guide her book as well as medical professionals.

“Often health professionals are trying to do the best things, but haven’t got access to the right information,” she said.

Rachel Andrew was one of those expert voices, she is the co-founder of Vagenius, a Tasmanian women’s health education business, and a physiotherapist.

She said while it is an average of 6.5 years to get an endometriosis diagnosis in Australia, in Tasmania it can take 10 years or more.

“There is so much information online, but not always good information, so women do almost need to become detectives about their own endo,” she said.

Ms Andrew said the ongoing culture of women’s pain being dismissed impacts women getting a diagnosis.

Young woman lying down in foetal position.

“There are many ways to change this, education and training are an impactful way to do this. Communication, teaching women about their bodies, and about their disease is empowering for them,” she said.

Ms Andrew said boys and men also need to be informed to be able to support but also help normalise open discussion around women’s menstrual health.

Ms Shannon said attitudes are changing.

“We know now that it’s important to talk about period pain with others, so that we don’t live with unacceptable levels of pain,” she said.

For information check out Endometriosis Australia.